Monday, December 06, 2010

Michaela’s psych med was increased on the 20th of November. Because of her recent history with EVERY drug change (how she crashes after a few days), Chief and I agreed that it would be best if she wasn’t discharged until we gave that change a good week to show it’s true colors: either good or bad. And since the 7 day mark fell on a Saturday, and he was going to be the Attending the following Monday the 29th, we agreed that that day would be a good day to discharge, if she was good.

But she wasn’t.

Well, as far as psychosis goes, she was better. Much better. No more screaming or throwing things. No more hollering out the window to unseen people. Right after the drug change, she would get angry with me more than usual, but that went away too. If she did anything kinda weird, it was some inappropriate silliness or weird voice, but that was something I could live with.

Where the problem lied, was that she slept.... All.The.Time. Up to 20 hours a day. She’d get up and play for 5-10 minutes, and then back to bed. She’d wake up to eat, and then right back to bed. She’d be awake, but with her eyes closed, laying in her bed and refusing to open her eyes or get up. If you asked her if she wanted to go somewhere or play with something, she would say, “No. I’m sleeping. I don’t want to get up.”

Her quality of life was just not where it needed to be. Sure she was calm, but she didn’t have any fun, any happiness, any LIFE. If we went home with her like that, she wouldn’t have been able to go to school (which she loves), or stay awake for Sunday School, or even tolerate being with the family at all. It was like she was depressed, at the very least.

As much as the psychosis wasn’t good, neither was the incessant sleeping. Something had to be done to get her more even keeled.

****

So when Chief came back on service on Monday, I had a bit of anxiety about the discussion we would have. I felt bad to complain about the sleeping. Especially since it was so much nicer than the screaming, AND he said that it wasn’t anything to worry about as long as it didn’t go 24 hours straight.

But I knew she could be better than that. I was willing to go home, if that’s what he wanted to do (seeing as how we had been here for 5 weeks with only a 2 day break), but I wanted him to tell me when we could try to fix the drug doses so she would stay awake. I was also concerned about some testing she would have done on January 3rd, where she would go through something similar to a 6 hour IQ test. I knew there was no way she could handle that in her current state.

On top of that, she didn’t have the greatest day on Sunday. Some of the worrisome behaviors that had escalated into mania a few weeks before, were creeping back in. She also went back to sleeping a whole lot. The nurses didn’t notice it, visitors wouldn’t notice it, but I sure did. Was I on Lava Alert? You bet. And I had every reason to be, too.

How could I NOT be, when every other time, my gut instinct was spot on? I may not have an M.D. after my name, but I sure know Michaela. That had been proven out.

So anyhow, he came in with the team (including Michael, the resident who’s been around since all this started), and the first thing he asks me is, “So how were her last 4 days since I saw you?”

I had already decided that I would take the short and concise approach. I wouldn’t act overly concerned either way. I would just let him think and do what he wanted to do.

“Well, I wasn’t here Thursday (Thanksgiving), Friday she slept all day, Saturday was a great day, Sunday wasn’t that great, and this morning she had a 20 minute conversation about someone out the window during breakfast.”

He sighed and turned his attention to Michaela.

She had already put herself back to bed and was sleeping pretty soundly. He crouched down to where he was eye level with her, since she was sleeping on her side. He opened one of her eyelids. Then he quietly spoke to her:

“Hi, Michaela.”

Nothing.

He rubbed her face, patted her back, opened the eye again.

“Hey, Michaela. Will you wake up for me?”

Nothing.

He put a little more force into it, gently shaking her by the shoulder this time. When that didn’t work, he watched her face while he put some force on her nailbeds (which is painful), hoping to see an instinctual jolt away from the pain or a grimace; or better yet, hoping she would wake up.

She pulled away, but didn’t open her eyes.

“Oh, Michaela. I’m going to have to get mean if you don’t open your eyes.”

He waited a moment, then reached down and got a good hold on her toe. And although I couldn’t see from where I was, I assume he used the same maneuver, but with some more force. This time, it got the desired effect.

“Ow. That hurts.”

“I’m sorry. Will you come talk to me?”

Sleepily, she slowly rose up to a sitting position, “Yeah.”

Once he got her up, he dug into his black doctor bag (yes, some doctors still use them), and got out his stethoscope. I had NEVER seen him use one before, or even have one hanging around his neck or anything. It was peculiar.

After that, he grabbed a reflex hammer, which I had seen him use a time or two before, but Michaela was much younger. After going through all the different spots, he focused his attention back on her wrists and elbows. Using both hands, he would move the joint, back and forth, back and forth. It was obvious from the force he was putting into moving her arms, that there was something a bit different about them. Some resistance. He kept going back and forth from one joint to the other, testing the movement.

He looked at Michael, his resident, and without speaking, gave him a knowing look that said, “See this?”

After the joints, he had her stand up and walk. First one way, then the other. She complied easily, but didn’t speak. Instead, she yawned.

He stopped her and turned her so that he was behind her. I thought he was trying to see if she was steady on her feet, because he circled his arms around her (without touching her) to make sure he would catch her if she fell. She stood still and stable after a brief moment.

Then he did something I completely didn’t expect.

He quickly went from circling her with his arms, to smacking her on the front of her shoulders with both of his hands. He used enough force that she would fall backwards towards him.

“Whoa! Whoa!” Michaela yelped, as she stumbled back and tried to regain her balance and stand upright again.

Chief looked at Michael and winked.

He did it two more times, and each time she did a better job catching herself quicker. He seemed satisfied that he had gotten a good picture of where she was at, and let her sit back down on her bed.

He turned to Michael and sighed. “I think she’s got some rigidity. We need to talk to Psych and get their opinion on this. And I also want a routine EEG, ok? That’s what we’re going to do today,” he turns to me, “Ok? That’s what I want to do today.”

“Ok. What is it that’s wrong?”

“I think she’s showing signs of Parkinsonianism. The stiffness in her arms is a side effect of the psych med, and I want to make sure Psych weighs in on that.”

Even though he didn’t say it, I imagine he was recalling how she responded to the first psych med he put her on at the end of Oct. That drug would cause her to “freeze” for five minutes after she got a dose. Blood work showed that the drug was NOT reacting well with her system, and they needed to take her off of it immediately (ie: the word “deadly” was used). The slight rigidity she was experiencing with the newer med, could be a precursor to the problematic freezing she went through a month ago.

So Michael put the orders in with the nurses, and they turned to leave.

Not one word was mentioned about going home.

****

Dr. Pannel, the Pediatric Psychology resident, came in later that day. He asked all the usual questions, including ones that just didn’t apply to Michaela (ie: has she ever acted suicidal?). We discussed the excessive sleepiness, the rigidity, and another sign I kept seeing: an incessant thrusting with her tongue.

During the course of the conversation, however, Dr. Pannel said something that really made things clearer for me. He said that sometimes, when a person just can’t seem to tolerate meds well, or continues to have neurological problems despite therapy and treatment, they describe the problem as “brain failure.” Most people are familiar with “heart failure,” “kidney failure,” or “liver failure.” But the brain is an organ just like the others, and it can have the same overall problems that the other organs experience. In any case, it’s not so much that the organ will “fail,” per se, but more that it is struggling to function normally. It’s level of sensitivity skyrockets, and you just can’t do anything very fast or aggressively because that organ will just up and quit completely. Michaela’s brain is acting just like that. Every little change is throwing her brain into a crisis. And in order to keep it from getting damaged in a big way, we have to take each step carefully, slowly, conservatively. That just made a whole lot of sense to me.

After we talked, he examined her himself, and also noticed the rigidity in her wrists. He wasn’t sure about her elbows, because she wasn’t allowing her arms to relax enough. But he brought his Attending in to see her, and he was able to feel it. Between the two doctors, they hemmed and hawed over her case and what the side effects meant (some of the side effects were appearing much too soon, some much too late). By the time they left, they had decided to try to change the psych med from twice a day, to 3 times a day. AND they lessened the dose.

Which definitely made me nervous.

****

The next day, Tuesday, was the BEST day Michaela has had in a long time. Maybe even the best since all this started two months ago. I just really felt like I had my kid back. I took her out of the room to go play with some toys at the Children’s Harbor (a type of YMCA for kids, attached to the hospital), and she enjoyed it immensely. Allyson (Dr. E’s coordinator) found us there and could not believe how good she looked. She just kept staring at her with her mouth gaping.

I felt the same way.

On Wednesday morning, Chief was out sick and when Dr. Head Honcho came through asking about Michaela, I was quick to tell him that if Tuesday was any indication, that I felt we had hit our “magic number.” That morning, she again woke up and was normal. So after breakfast, I took her back to the Harbor, thinking she would love to just get out of the room and play with different toys. She did great there. She found a toy she loved (of course, music was involved), and just sat there and played with it over and over. She would answer questions, and make comments about the toy, and just did beautifully.

We ended up leaving so she and I could eat lunch. After she ate, she promptly put herself to bed to take a nap. It wasn’t like the past week had been, where she was sleeping all the time, but just a normal reaction to a busy morning. She’s always been a napper.

In the meantime, Allyson came back into the room to update me on some more test dates. She asked about her day, and if it was just as good as yesterday. I enthusiastically told her how excited I was at her apparent change of mental state. She had been doing well enough for me to actually think about asking to go home. Even the EEG showed that her seizures were well controlled--just the typical spikes that we see when she has that test. Abnormal, yes, but normal for her.

As we were talking, Michaela woke up.

Almost immediately, she started hallucinating.

In an attempt to disprove what we knew was happening, Allyson and I kept trying to find a logical reason for what she was “seeing.” Michaela kept referring to a person outside on the roof, describing how they looked, what they were holding. Ally would look out the window to see if there was something, anything that even remotely resembled what Michaela said she was seeing. There was nothing.

Since she is technically a nurse, Ally ran her through a series of tests (“Michaela, look at me, squeeze my hand”) to determine if she was having some sort of weird seizure (at least, that’s what I think she was doing). Once she was satisfied that she was, in fact, hallucinating, Ally just sat there and watched her. We both did.

I said, plaintively, “I was going to ask Dr. Head Honcho if he could send us home tomorrow....”

Sighing, Ally looked at me, “I guess she needs a few more days....”

I stared at her, crushed.

“Ally, we’ve been dealing with this for 2 months.”

I don’t know what a few days are anymore.

****

Michael was paged and about 45 minutes later he walks in the room. Michaela was no longer actively hallucinating, but she was buzzing around the room, muttering about alligators and random nonsense. She would press buttons on the wall, smack the windows, pull out the bed, tear off the sheets, throw her doll. All the while, blubbering about things that made sense only to her.

He brought up how she’d only been on the new dosing schedule for less than 2 days. Maybe she just needed more time.

I brought up how the change worked within hours, and she stopped sleeping. It was already working....just in the wrong way.

He thought maybe she needed to get out of the room more; that perhaps she was tired of those “four walls.”

I reminded him of how I took her to the Children’s Harbor 2 days in a row. If she was agitated from the seclusion, it would’ve happened last week, or the week before that. Not 42 hours after a drug change. And definitely not after we had just gotten out finally.

He had no answers after that. And I didn’t expect him to.

So I told him that I wanted to admit her to the psychiatric ward. I wanted that team of doctors, therapists, and nurses to have complete access to her. Not only to see what I was seeing--even the subtle things--but to address the problem head-on and tackle it once and for all.

He agreed to talk to Dr. Head Honcho.

The next day, she was moved out of the care of Neurology, and into the direct care of Psychiatry. She now had a room on their floor in the hospital.

I, was now walking unchartered territory.

****

It has now been a week since that fateful last drug change. Michaela has been on the Psychiatric Unit for almost 4 days.

I am barely allowed to see her. Not much more than an hour a day on the weekdays.

When I go up to the unit, I take a non-descript elevator that is in the bowels of the hospital. When I get to the correct floor, it immediately looks like I pressed the wrong button. The elevators open into a small room with a few chairs, two windowless doors, and a set of lockers. Restrictions are framed and posted on every hand.

“No weapons allowed.”

“Only Authorized Visitors Will Be Permitted.”

“Please Press Call Button and Wait to Be Spoken To.”

If I want to see my daughter, I must do as I’m told, so I press the button and wait for the powers that be. They squawk back through the speaker, and I strain to understand what’s being said. Because I really want to see her, and they are the gatekeepers.

“Who are you?”

“Kelly Morris, here to see Michaela Morris.”

Pause....so they can see if my name is on the sheet of “approved visitors.”

“What’s the Code word?”

After rattling it off, since I know it as well as my own name, the interrogation goes further:

“Do you have anyone with you?”

A question I find humorous, since I know there is a camera staring right at me and the entire room, which they are looking at as they ask me that very thing.

“No.”

“Do you have anything that needs to be locked up?”

“Yes.”

I say ‘yes’ because I know I’m not allowed to have my keys, my cell phone, my computer....

....my dignity, my parental rights.

Since I have contraband on my person, the guard comes out to lock my things in the lockers. After unloading my pockets, he proceeds to use a wand and screen me, TSA style, from top to bottom.

I doubt visiting a known murderer would be any more violating.

Michaela’s new room is stark and sterile. There is nothing that could be broken and used as a weapon. No door knobs, faucet handles, tables, even the toilet is constructed differently. There is no toilet paper holder. Any heat that comes in the room, can go almost no where. The cold floors, hard surfaces, and empty walls cannot hold it in or soak it up.

She lays in the bed, curled up beneath her blankets and holding the latest toy subject to her delusions. There is toothpaste dried in the corners of her mouth, and spaghetti sauce in the edges of her fingernails: the staff’s attempt at parenting. Her hair is a tangled loop of someone’s best intentions and fear. She is dressed in standard issue scrub-style clothes that are too big for her.

They are dyed a sorrowful version of “Kelly green,” and the irony is not lost on me.

I sit on the cold plastic chair and watch her sleep. Although I haven’t asked directly, I know that I am not allowed to leave her room with her and go sit in the more comfortable living areas they have. If we want to visit, that’s where it has to happen---in that stark, bleak place.

So I sit.

And I stare at what has become of my oldest, my first child.

Trusting God to change what I cannot. What Chief cannot. What time has not.

Yours Truly.....

I am a 34 year old wife and mom of 6. This journal was started to chronicle our adventures with our daughter and the treatment of her rare epilepsy. However, while it was written, it became a journal of our everyday lives as well. Hope you laugh, cry, and think as you read....I sure did :)